The Work of a Professional Patient

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m a Professional Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled. If I want my appointments on time, my drugs on time, my healthcare monitored, I have to be the person to make it happen. I’m an employee with multiple duties yet no job description, no contract, no benefits, no time off, and certainly no paycheck. I manage the phone lines while sitting at my desk with my laptop, phone, and notepad. Or in my bed, at my kitchen table, or out of state. And I pay someone else while I’m doing the job they should be doing. If I was still a healthy person this wouldn’t be so bad; I’d have to manage frustrating phone calls and erred bills maybe twice a year if I’m unlucky. That’s not so bad. But having to do it multiple times a week wears a body down. Living with ankylosing spondylitis wears a body down – it’s almost exactly like having the aches and fatigue of the flu, 24/7. Pair the two – constant healthcare phone calls (on top of appointments, lab visits, and self-medication) and chronic pain – and I have a full-time job. One that I didn’t apply for or even consider when I earned my degree in Sociology.

Don’t get me wrong. Doctors and nurses do a lot, often more than their fair share. They have way more patients than they can handle. It’s not their fault. Oh yes, I do know there’s a patient advocate per facility. Let me repeat, A patient advocate. One. For all the patients. Maybe two. Have you heard of more than one? Regardless, the patient advocate usually becomes just one more person to call. One more person to repeat the story to. One more person who ends up giving me another list of numbers to call instead of the answers and the help I need. But they get paid. I don’t and I’m working just as hard or harder, and it’s me we’re working for, right? Right? Is anyone listening? The system exists for the patient, right?

So I have lists and lists of numbers to call. There are no dead ends but many cul de sacs. I’m not quite going in circles with these calls, it’s more like I’m on the shuffle setting on an iPod; I could reach the same person twice but the machine is in charge of that chance. Once I’ve reached the person who is supposed to know the answer I’ve often figured some other possible workaround myself or forgotten why it is I’m calling this person. And often she delivers news that I can’t be helped or that she has no idea why I called her. At the end of the day I’ve spent hours repeating my story to different people who are supposed to help, but who can’t. Or don’t know how. Or who give me another list of numbers to call. Consider this example:

A self-portrait photo shoot with my weekly shot

I call my pharmacy to refill my prescription for my biologic – a specialty medicine that is shipped to my door every four weeks with four pre-filled, auto-injector syringes packaged in a refrigerated box. I learn I need a new prescription written before I can order my refill. I wasn’t notified there were no refills remaining on my prescription – usually the pharmacy and doctor work this out ahead of time so that I don’t even have to think about it. I’m told by the pharmacy it’s faster for me to call the doctor because it takes longer for the pharmacy to do so. I need my next shot in a week. There is no substitute and no generic for this medication I use to manage my ankylosing spondylitis. If I miss a shot I am at greater risk of a flare-up, but even if that doesn’t happen my pain levels dramatically increase within a day of missing a shot. I experience more pronounced symptoms (severe all-body joint pain and fatigue) and miss work, appointments, and anything else on my calendar. Long term, without the biologic, my disease can progress faster. Time is precious. So, I call my doctor to ask him to write a new prescription. And I wait on hold. And I finally speak to a receptionist. And I wait on hold longer while I’m transferred to my doctor’s assistant to leave a message. And I wait for the call to be returned. And when I am called back, later that day or the next day or a few days later, I have to be the squeaky wheel to get what I need in an expedited fashion. Then I have to call the pharmacy back and speak to a different person who has no idea what I’m talking about, until, 24-48 hours (or longer) later, my prescription is on its way to me but a week late because the time it took for me to do all the legwork to get the refill. And sometimes I have to call my insurance company and start the process over because they don’t want to approve the renewal of the prescription I’ve been taking for over a year.

Hold it. Put the system on hold, not me.

Not even this much coffee can get me excited about being on hold for four hours

Our system is broken.

Let me get this straight: I am happy to manage my health. This is different than having to manage aspects of my healthcare that should be non-issues in the first place. Managing health includes taking my medication as directed, caring for my body, eating healthy food, getting enough exercise, and feeding my spiritual and mental self. Everyone has that responsibility. Managing health is an individual exercise. Managing healthcare, for a chronic disease patient, involves roughly 10-20 hours per week (the example given in that link is a patient with type 2 diabetes, not ankylosing spondylitis) or more if there are multiple conditions or the disease is not well-managed. Managing healthcare involves making phone calls to follow up on appointments, labs, insurance, records, billing, prescriptions; researching the internet for different treatments, healthcare plan options, financial assistance programs, doctors; going to appointments; filing medical records, bills, receipts, prescription information; taking medication as prescribed, following treatment regimen, tracking additional expenses not covered by insurance; etc etc. Many of these things should not be necessary if the payments I make for my treatment rendered the services due. The healthcare system as it currently exists is inhumane.

I want to work. I desire to be a fully productive member of society. If managing my healthcare wasn’t a part time or full time job, I might be able to work a full-time job. Perhaps fewer people would rely on public assistance to survive. In my own experience, if I could work and worry less about my healthcare, I’d feel more “normal,” I’d be less mentally exhausted, and I’d have more incentive and desire to take care of my health. My mental health would be better with less stress about relying on a system that is profit-centered rather than patient-centered. The healthcare system should prioritize patient well-being on all levels and that includes handling the administrative side of patient care as well as the things it currently does….ahem, what do they do all day besides handle customer complaints? So yeah, it’s win win for all. Happier patients (consumers is too strong of a word if we’re not getting what we pay for) means less work for everyone and it is possible, if the system worked like it is supposed to.

I don’t want more money out of my health insurance company, I want to pay less out of pocket. I don’t want an apology, I want an apology AND I want to stop having to manage my own healthcare for 20 or more hours per week – that means I want the corporations, the providers, the money-makers, to do their jobs. I need a system where I don’t feel I’m throwing money into the mailbox while I sit at my computer day after day tackling the problems caused by a broken system that sucks money away and uses it to put up billboards and create ads on television. And, hello healthcare system, please quit placing all the guilt of high medical costs on the patients. If we received better care in the first place, we wouldn’t need so much specialized care. It’s not our fault we’re so sick. It’s yours.

So, if I’ve calculated correctly, health insurance companies, for the conservative estimate of twenty hours per week I manage my healthcare on top of the time I spend on my health, at $15/hour – a conservative estimate – I’ll be expecting a monthly paycheck amounting to $1,200 from here forward (including back pay dating back 3 years when I began paying out of pocket for health insurance), which makes my healthcare free, imagine that. Also, be forewarned that I’ll be counting my whole living space as office space on my taxes next year since I have filing cabinets full of bills and letters and notes that I’ve taken regarding dealing with you. So, universal healthcare, anyone?

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11 thoughts on “The Work of a Professional Patient”

Again, you nailed so many things I think of so often. If my “job” was to take care of me, I’d be so much better off. I’ve got a stack of bills and I try to do one a day, but sometimes even that’s too much. For every bill I call about, negotiate payment plans, etc. 3 more come in the mail that day. There is literally not 1 day that I don’t get a bill in the mail, or a statement of coverage or other mail I must deal with. It’s too much…and when I ask “is there someone who can help with paperwork and getting this settled”, the answer is no 99% of the time.

I think the “system” intentionally wants to wear us out. Then we will die, and chronically ill, but not too sick can give them more income. Establishment medicine does not care about us. They make big money on acutely ill patients. I am glad that many acutely ill patients get help. But that is where the big money lies, and chronically ill patients just do not matter. Most doctors are not trained at all to help for us. I have been fired many times as a patient. The first time left me emotionally scared for a very long time. Now it is routine, and expected. Makes me feel like a Nazi victim who felt so extremely angry inside, but didn’t dare make a sound about it. I am sure I am not the only victim who feels that way. We lose our freedom, jobs, independence, any self control. And what happens when you can no longer do your professional patient job? I met a new Lyme patient in the last week. She had actually been ill, but diagnosed for over 10 years. No way does every Lyme patient get the bulls-eye rash, but she had it over 10 years ago. No doctor would diagnose her even though she had a picture of it. She kept the picture of the rash. She was some place where they were showing different kinds of rashes recently, and finally figured out what was wrong. She is VERY angry at the medical community. I never knew there was someone as angry as I am. But she joins me. I cannot waste my emotions on the anger, but do what I can to raise awareness. I am not very good at it though. She has a very difficult time walking. She used to be an avid hiker, in low grasses many times, very healthy, outdoors a lot. That is a very common environment for a vector to give you a shot with “nature’s dirty needle.” She has just joined us, and thinks others in our group are so smart. She has no idea how educated she will become. I am hoping and praying that she will recover and not become a permanent member of our chronically ill, invisible disability club. Yes, she has been sick a long time, but if she has buckets full of money, and does the right things, she can recover. I hope for that for her. One thing she has and all the new people I met fortunately have, is a lot of emotional support from family members. There are a lot of chronically ill, and invisibly ill, victims who do not have that. Charis has done a great job describing how the system hurts all chronically patients. This is a message that should be put on the front page, if we still had that, of every newspaper in every country in the world.

Hi Charis and thank you for this blog. As a fellow professional patient with AS and other Comorbidities, I appreciate how well you have explained the sheer amount of work that goes into being a proactive professional patient. I am constantly asked if I am a nurse or a Doctor, And how I can possibly be so medically literate since I am neither. I am often surprised that more chronically ill patients are not more knowledgeable and literate about their disease/diagnosis. I havr been doing all the same tasks and (jobs) you have described for 25+ years. I would add to the list, hours of other types of research as well. Reading medical journals, following trials of new and emerging medications, experimenting with natural and holistic approaches, nutrition research and so much more. Many of us know that in order to receive the treatment we so desperately need, that we must do all of this. Many have no idea, or the education as to how the system works, to do much of what is required, which is why advocates are so important. Social Media and the Internet in general have opened up a world where we can all become advocates for each other, unlike when I was first beginning treatment and was being misdiagnosed by some of the best and brightest in Boston. I recall writing (on paper) to pharmaceutical companies is Europe to try and gain access to information and medical supplies, thank goodness for email now. Blogs like yours give others hope, information, and incentive to help others. This is a long winded Thank You, but nonetheless a Thank you for expressing what so many of us feel.
Lorraine Biggins

Ugh, so true. I hate that my healthcare is now a full time job, yet I have to fight disabilty to pay me what the system caused by not diagnosing or treating. So many things wrong, but I don’t believe Universal Healthcare (run by the US government anyway) will work either.

a voice for many

About Charis

Unstoppable, award-winning advocate since 2013, Charis is a professionally disabled writer, speaker and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. They live with two furry part-Maine Coon cats in a falling-apart house bought while living in extreme poverty. Click the picture to learn more.